{"id":217733,"date":"2025-12-06T01:06:09","date_gmt":"2025-12-06T01:06:09","guid":{"rendered":"https:\/\/www.europesays.com\/ie\/217733\/"},"modified":"2025-12-06T01:06:09","modified_gmt":"2025-12-06T01:06:09","slug":"an-excerpt-from-aida-austins-epilepsy-memoir-seized","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/ie\/217733\/","title":{"rendered":"An excerpt from Aida Austin’s epilepsy memoir, ‘Seized’"},"content":{"rendered":"

Aida\u00a0Austin\u2019s childhood summers were spent in West Cork, where her parents had a \u201ctiny, ropey old cottage\u201d.<\/p>\n

Her dad, a Dubliner, was a teacher, so come end of term, the whole family \u2014 Austin has five siblings \u2014 would pile into the car and take the Innisfallen ferry from the UK to Cork, happily foregoing London life for summer in the Rebel County.<\/p>\n

\u201cEven as a child, I just was blown away by the peace of it and the beauty of it and the unchanged nature of it,\u201d she says now.<\/p>\n

Serendipity intervened in adulthood, when a work opportunity created a chance for Austin\u2019s young family to move to West Cork and build a life there.<\/p>\n

\u201cWe were frantic to get out of London,\u201d mum-of-four Austin recalls, \u201cwe had two smallies at the time and I was pregnant with my third.\u201d<\/p>\n

Iona is Austin\u2019s fourth and youngest child. The baby of the family was two and a half years old when she began having epileptic seizures.<\/p>\n

The year was 1997. It was an evening just like any other, with the familiar wind-down routine well underway.<\/p>\n

They had put the children to bed and were back downstairs, busily tidying away the kids\u2019 toys, when they heard a strange noise from upstairs. They didn\u2019t know it then, but their toddler daughter was having her first seizure.<\/p>\n

\u201cFamily illness detonates like this: when you feel safe, your front door opens and a bomb is thrown in,\u201d Austin, who is now 60, writes in Seized, her memoir of the years that followed.<\/p>\n

\u201cI wanted to honour Iona,\u201d she says simply, when I ask her why she wrote the book.<\/p>\n

Austin, who is an artist and a writer \u2014 she was an Irish Examiner columnist for seven years \u2014 is speaking to me over Zoom from her West Cork home.<\/p>\n

The flower-patterned butter-yellow shirt she\u2019s wearing lights up her face, while the riotously beautiful garden she loves so much adds vibrant pops of green through the windows behind her.<\/p>\n

\"AidaAida Austin speaks openly in her kitchen about Iona\u2019s lifelong epilepsy and the love and resilience that shaped their story. \u201cAs a mother, you feel you have to be strong all the time\u2014you\u2019d do anything for your children.\u201d Picture Chani Anderson.<\/p>\n

Committing to print an account of the years that followed the onset of Iona\u2019s epilepsy was a way of making sense of it all, Austin tells me.<\/p>\n

She knew she didn\u2019t want to write \u201ca long streak of misery\u201d, but she did need to offload some pain and fear.<\/p>\n

Over 45,000 people in Ireland are living with epilepsy, and an estimated 10,000 to 15,000 of those are living with uncontrolled seizures.<\/p>\n

Those statistics from Epilepsy Ireland paint a picture, but they don\u2019t tell the whole story. The human story. Austin\u2019s book does.<\/p>\n

\u201cTo be honest, I think my book could easily have ended up being nothing more than an unflinching exploration of maternal fear,\u201d she explains.<\/p>\n

\u201cBut what I really wanted to write was something that would reflect Iona\u2019s experience. And 200 pages on my fear was never going to do that.<\/p>\n

\u201cI wanted to acknowledge Iona \u2014 and by extension anyone who\u2019s ever felt brutally isolated from normal human experience; anyone to whom things have happened which are so strange and shocking that they feel as if they\u2019re pioneering an unknown, unheard-of path in life. That feeling is one of the loneliest in the world.<\/p>\n

\u201cWhen I was awake in the small hours, and our daughter\u2019s seizures wouldn\u2019t stop, I\u2019d imagine other daughters and other parents somewhere out there in the world, dealing with the same thing.<\/p>\n

\u201cI wanted to write something for them that said, \u2018you\u2019re not isolated. It\u2019s 3am in the morning and you\u2019re awake. We\u2019re awake too. Your child is in focal status. So is ours. You\u2019re administering buccal midazolam in a state of scarcely controlled panic. So are we. And we will all lie awake until morning while the rest of the world sleeps\u2019.\u201d<\/p>\n

During the course of our conversation, Austin references A Heart That Works, actor Rob Delaney\u2019s memoir about his son Henry, who died of a brain tumour at the age of two.<\/p>\n

She has recently read it and, while she emphasises that her and Delaney\u2019s situations are \u201cnot comparable\u201d, the book really spoke to her.<\/p>\n

Delaney\u2019s loss is undeniably tragic, but with the finality of death comes closure. There is grief, yes, but life can, and inevitably does, move on. With chronic illness, there is no closure, because there is no ending.<\/p>\n

\u201cI wanted people to understand how a particular life is lived and how that plays out in a family and how it continues,\u201d Austin says.<\/p>\n

\u201cI think why I related to what [Delaney] said, that he, I think, was fed by anger, and there is anger there that you are watching your child continuously suffer. I think [writing is] a way of processing it. I started to write something out of me, and then it became the book that it became, which was about a family and about Iona.\u201d<\/p>\n

I read Seized in one sitting.<\/p>\n

\n \u2018A love story\u2019 is how Austin\u2019s literary agent, Marianne Gunn O\u2019Connor, described the beautifully written book, and that is what it is.\u00a0\n <\/p>\n

It is the story of a mother\u2019s love for her child, of a family\u2019s pulling together and supporting each other through difficult times, a story of resilience, of coping, of hard, difficult days, of finding ways through.<\/p>\n

It\u2019s a rollercoaster of a read that will resonate deeply with any parent of a sick child, or indeed any carer.<\/p>\n

Anyone who has been there knows, and those who haven\u2019t will, in the pages of Austin\u2019s memoir, find an understanding of what it is like when a loved one is chronically ill.<\/p>\n

In the year after her diagnosis, Iona had many days when she experienced multiple seizures, sometimes up to 80 in a 24-hour period.<\/p>\n

Medications and treatments were tried and discarded as they failed, until eventually, a drug was found that helped, and while the seizures did not stop, they became less frequent.<\/p>\n

A large portion of the book is taken up with Iona\u2019s brain surgery and its aftermath, and the book concludes, epilogue excepted, with a chapter written by Iona herself. (The cover art features her vibrant watercolour of a tree.)<\/p>\n

The blending of the two voices, the two perspectives, the mother and the daughter, the parent and the child, the carer and the cared for, give the book a profound emotional depth.<\/p>\n

\u201cThe book found its own ending somehow,\u201d Austin says.\u00a0<\/p>\n

\u201cMy daughter wrote the last chapter and I wrote the very short epilogue so the narrative kind of came to rest in both our voices. It came to rest in an uneasy acceptance that health is not a birthright, that illness is part of the human condition. My daughter didn\u2019t weave in any tidy reassurances for the reader. Neither did I because there aren\u2019t any, apart from love, which was the mainspring for this book.\u201d<\/p>\n

\"AidaAida Austin reads on her bed\u2014the very place she wrote Seized\u2014a quiet refuge during years of navigating Iona\u2019s complex epilepsy. \u201cWriting became a way to compartmentalise what felt overwhelming.\u201d Picture Chani Anderson.<\/p>\n

Austin found the act of writing of the book helpful in that it lent order to her thoughts.\u00a0<\/p>\n

\u201cAt the very least it organised the mess in my mind. To reduce the chaos of it all to some sort of order on the page was very satisfying. It gave me a sense of control.\u201d\u00a0<\/p>\n

She did not, however, find the writing of Seized to be cathartic.<\/p>\n

\u201cI think for something to be cathartic, feelings have to be dormant, to some extent. They have to be safely enough behind us. And mine aren\u2019t because my daughter\u2019s epilepsy is intractable and its emotional impact is ongoing.<\/p>\n

\u201cSo the feelings are quite surface, because they\u2019re activated by seizures three or four times a week. A seizure is inherently dangerous. Sometimes life-threatening. So it would be completely bizarre if I wasn\u2019t afraid on some level, most of the time.<\/p>\n

\u201cThe fear I describe in the book is historical. Attached to past events. But I experienced this same fear yesterday, as it happens.\u201d\u00a0<\/p>\n

Fear, which Austin likens to a \u201csleeping lion\u201d, comes up repeatedly during our conversation and is something she feels is not talked about enough, if at all, particularly parental fear.<\/p>\n

\u201c[Rob Delaney] talked about he had a new capacity for pain. I have a new capacity for fear,\u201d she says, and how could she not, having lived 28 years of her life witnessing her little girl, now a young woman of 30, experience thousands of seizures.<\/p>\n

But among the challenges and the down days, there has been an abundance of joy.\u00a0<\/p>\n

\u201cThere is a huge amount of laughter in our family; there is a huge amount of fun,\u201d Austin says.\u00a0<\/p>\n

She finds grounding and solace in her garden \u2014 \u201cI love gardening. I\u2019m obsessed with flowers. Obsessed.\u201d \u2014 and in her art.<\/p>\n

In her garden was a mandala, a \u201cbig, round bed\u201d that mirrors a mandala she drew for Iona before she went in for brain surgery.<\/p>\n

She placed \u2018Iona\u2019, her name, in the centre and all around it, wrote names of everyone who loved and supported her, round and round in concentric circles to the edges of the page.<\/p>\n

In her chapter, Iona describes how that mandala remains a touchstone for her, a reminder of the love that surrounds her.<\/p>\n

When I ask Austin what she would like a reader to get from the book, what her hope would be, her wish is simple and heartfelt.\u00a0<\/p>\n

\u201cI would like readers to be more patient and kind with people who struggle,\u201d she says. \u201cThat would be a lovely outcome.\u201d<\/p>\n